Today it want to introduce you to someone who is very dear to my heart. She is a woman inspiring change: Karen Ball, founder of the Sturge-Weber Foundation (SWF).
*Full disclosure here, I have known the SWF for a very long time. I have designed their newsletters and marketing material for 15 years. Told you it was a long time!
Last Friday I had the pleasure of attending Sturge-Weber Foundation’s dinner honoring Dr. Tom Rohrer in Denver. This was the first time I had actually met Karen, and Bonnie Ayers (Director of Programs) in all these years of working with them. SWF is based in New Jersey. I am in Colorado, so we phone and email. A lot.
It all started in 1987, when Karen and her husband, began looking for answers for their daughter, Kailyn who was diagnosed with the rare disease called Sturge-Weber syndrome (SWS). At the time, not much was known about this disease. But, the Ball family needed answers!
What is Sturge-Weber syndrome | “… a neurological disorder indicated at birth by seizures activity and large port-wine stain birthmark on the forehead and upper eyelid. Neurological symptoms associated with Sturge-Weber syndrome include seizures that start while the person is in infancy and can worsen as they age.” (Source)
The most apparent indication of Sturge-Weber Syndrome is a facial birthmark or “Port Wine Stain” present at birth and typically involving at least one upper eyelid and the forehead.” –SWF
Besides seizures, other neurological concerns include blood vessel growth on the surface of the brain and glaucoma.
SWF Mission | To support individuals and families affected by the rare diseases SWS, Klippel-Trenaunay (KT) and Port-Wine Birthmarks (PWB).
SWF has made great strides since its inception 26 years ago. The Foundation now supports research grants, connects others with this rare disease, patient tissue donation, an international registry, education projects such as Month of Awareness, fund-raising opportunities, hosting international conferences, and established 10 Centers of Excellence around the U.S.
Oh, and they also helped (along with researchers) identify the gene mutation, GNAQ as the cause of SWS and PWB. Pretty awesome!
Karen, along with the ladies Bonnie & Anne Howard, have worked tirelessly to built a foundation that was started from necessity to one that provides a valuable support community of almost 5,000 members for those diagnosed with SWS, PWB & KT.
Karen is living proof that “One person truly can make a difference.” Learn more about the Sturge-Weber Foundation here!
***LINKING UP AT Jumping Tandum. Go read other inspiring women and the stories they share.